01/20/2018 – Don’t Be a Hero – This blog has universal application but it is more significant for those who live and work around people living with CF.

01/21/2018 – Advancing the GI frontier for patients with CF – This article seems geared to medical professionals but there is good background material. Also, if you’re experiencing GI issues, you can point your caregivers to these resources.

01/25/2018 – Primer on Gene Editing and Stem Cells – A new link has been added to the CFFC web site that connects you to an article in the Journal of Cystic Fibrosis that provides basic information on gene editing, stem cells, and the legal and ethical issues associated with these topics.

It is with excitement that we announce a new quality improvement initiative here in Rochester at our Adult CF Center! The goal of this year-long project sponsored by the national CF Foundation is to improve the care of CF patients with advanced lung disease who are in need of referral for lung transplantation. We are paired with the UPMC lung transplant center in Pittsburgh, PA to work collaboratively on improving the referral process and post-transplant care coordination of lung transplant patients. The project kickoff was in Chicago, IL in October and work will continue until the NACFC in October, 2018. Teams are having weekly meetings and monthly teleconferencing with all 20 CF and lung transplant centers involved in the LLC (learning/leadership collaborative) across the country. In-person meetings will also take place in Washington, D.C. in March, 2018 and Toronto, Canada in June, 2018.

We are committed to this project and to our CF community as a whole! If you have any questions or curiosities regarding this project, please contact your Center, or any team member!